I Am Blessed

This cartoon is on the front of Meghan’s 4 inch medical binder. We have sometimes decided whether or not to keep a doctor by their reaction to this TRUTH!

It is late.  I should be asleep.  Morning comes fast and it is already after midnight.  I just can’t seem to find a way to unwind. 

I just had a long chat with a ‘new” friend.  That helped a lot.  But still here I am, trying to get these racing thoughts out of my head before I rest.  

I saw a new oncologist today.  The geneticist insisted I have one to follow me and one for Meghan.  Except I was having a hard time finding one who didn’t think Cowden’s Syndrome was contagious.  (Ok, perhaps I exaggerate, but they weren’t anxious to see me.) 

So the geneticist sent out an Email on Tuesday to some of his friends.  By Friday he had a name for me, (which means the genetecist is a KEEPER!) of a doctor IN network, and I met her today. 

She is lovely.  Of course, by already having the double mastectomy and the hysterectomy, I have made her job much easier.  Now she gets to push me to the fun stuff.  Next up- colonoscopy, and kidney MRI.  So tomorrow I will call to get the GI appointment, while they work out the authorization for the MRI. 

And all the while I will mourn a bit for the summer that wasn’t meant to be.  This was more, a necessary doctor “catch up period.”  I think by the end of August we will have at least 25 appointments done between us.  And those are just the ones scheduled right now. 

So, just when I start to get whiny and cranky about wanting some alone time to shop, or some fun time to swim, I remember.  Were it not for the work of the angel on my shoulder, that pushed my “prohylactic blilateral mastectomy” in March, I would have likely been spending this summer prepping for cancer treatment. 

So, we still get our trip to Disney, and there is always NEXT summer… 

I spent the last hour preparing for Meghan’s oncologist visit on Friday.  We haven’t seen this doctor for months.  There have been a few things going on.  So, I faxed her 32 pages of what we have been up to.  She wanted to review it before the appointment. 

I posted the cartoon because I had her binder out while I was preparing the fax.  I laugh every time I read it because even after all these years it is still true.  Even with our diagnosis of the PTEN mutation, and Cowden’s Syndrome, even with the precancerous thyroid nodules in Meghan, and her early puberty, she still has pain.  Every day.  And not one of these doctors that we take her to can tell us why. 

I thank GOD every day for her stamina, and her spirit and her spunk.  She is my love, my reality check, my perspective, my reason for being.  I feel displaced right now, from my church, my comfort zone – but not from God.  Even in the midst of all the chaos and uncertainty, I have a husband and a daughter that are beyond compare.  God has us in the palm of His hand.  We are blessed.  And it WILL be OK!

4 thoughts on “I Am Blessed

  1. Oh girly….I can relate to you on some points, and not on so many others because our stories differ enough. But I must tell you I feel your strength. You just keep pushing onward and you know how lucky you are and those are two of the most important components to survival.

    I can relate on the number of doctors appointments..I’m sure you beat me overall by far, but the last month I might just give you a run for your money..ha ha!

    Hang in there and keep doing what your doing…sending you positive thoughts. And ….here’s another thought…we BOTH need to go to bed!! 🙂 LOL Nite!

  2. The true blessings in this world are people like YOU! Every blog you write leaves me smiling and crying at the same time. You and Meg are on my mind EVERY DAY! Thanks for making me a better person simply by being my friend. LOVE YOU BOTH and feel your “disconnetion” and knowing how much it bothers me I can only imagine how you must feel. As always…HUGS and PRAYERS… XOXO

  3. Do you know if any of your doctors will do a brain MRI? Just in case? As a screening for an overall wellness check? Granted, I ponder sometimes “if only” had we known about “CHUCK” years prior. IF…it would have done any good. I just ponder about that. For you, and any people who have CS. I didn’t present with any headache stuff until it was 5 cm…not to scare you. Only to catch “something” early…had I ONLY known years ago about CS!

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